Primary CNS Lymphoma

ziegs22
ziegs22 Member Posts: 2
I am a healthy 32 year old male recently diagnosed with Primary CNS Lymphoma. I have been through 3 cycles of high-dose methotrexate with doses of procarbazine every other treatment and so far my progress has been great. I am writing because - from what I know about CNS Lymphoma of the brain - I am a very unique case. Because of the uniqueness of my situation I am curious if (1) there is anyone else out there that has a similar case; and (2) if anyone knows what long-term prognosis looks like ... I'm sure others of you have been equally frustrated getting a straight answer from your Doctor(s). Thank you for your responses and god bless!
«1345678

Comments

  • subito
    subito Member Posts: 4
    Hi, my husband had it, and
    Hi, my husband had it, and you're right, it's very rare. If you read about the prognosis on the Internet, you'll drive yourself crazy. Some say it's nearly curable and others have a much less positive prognosis, which may be one reason you're having a hard time getting a straight answer from your doctor. S/he really doesn't know. Everyone responds differently. That said, from what I know, the younger you are the better so you've got that on your side. And the fact that you've responded well to MTX is excellent.

    Make sure you go to a hospital where doctors have seen this illness a lot. Teaching hospitals are usually good.

    Look for articles written by Lauren Abrey M.D. and Lisa DeAngelis M.D. They're at Sloan Kettering in NYC and know a lot about the illness.

    I'm in Boston and found great doctors at MGH who knew the illness well.

    All the best,
    Ruth
  • leprechaun2
    leprechaun2 Member Posts: 79
    my husband was diagnosed
    my husband was diagnosed 6/08, age 52. He had 4 cycles of HD Mtx with procarbazine every other treatment. Problems with lungs stopped with 80% of the tumors gone! While on cytarabene,another tumor grew. Whole brain radiation was next, then rituxan to keep it at bay. 8 months, another tumor! Methotrexate with different chemos worked and now, thanks to an autologous stem cell transplant, he is clean, for 16 months!

    He has lost some ability to concentrate, his short term memory is greatly reduced and he has retired on disability but he is still the man I love. Speech therapy has helped rewire his brain, a social worker helps us to navigate the frustrations which come to both of us.

    Sloan kettering is the best! Dr. Abrey was his doc but she has moved. Dr. Kaley and Dr. O'Muro are wonderful. Dr. Sauter is the hemotologist who has cared for him throughout the transplant and I could not ask for a better dr.

    Good luck. This disease is tough but it can be beaten. I will be happy to answer any questions you have along the way! God bless you and your family and friends!
  • packvic00
    packvic00 Member Posts: 1
    Primary CNS Lymphoma
    It is good to see some updated discussion on PCNS lymphoma.
    Although the case is VASTLY different from yours, ziegs22, my 73 year-old mother was diagnosed with it in 2/11 after fighting vertigo, vomiting and unsteadiness for almost 10 months. Many specialists were seen and it took several falls and an ER visit to finally find the tumor. Everything I have read online is very negative in terms of prognosis, part of the reason I am sharing at this stage.
    Her primary lesion is in the cerebellum. She is in good health otherwise. After undergoing 5 rounds of methotrexate in-patient, she also had radiation just aimed at the cerebellum in an effort to reduce neuro-cognitive decline associated with WBRT in the elderly.
    Again, these stats don't respond to your question due to age difference, but maybe helpful to others who look online seeking some answers. Her oncologist told us the following for long term prognosis:
    "Prognosis is variable, but for someone her age and in otherwise good medical condition, would expect about 80% alive in 2 years, 50% alive in 4 years, 30% alive in 6 years. And remember people in the 70s and 80s can die from other things too. Regarding remissions, I would estimate about 60-70% chance of achieving remission and about half of those patient maintain remission long term (3-5 years or more). These figures are all specific to PCNSL. If relapse occurs, there are treatment options but I would reserve that discussion for the setting of a recurrence."
    She is doing quite well, has resumed driving and has been officially told she is in remission. Her kidneys did suffer a bit as a result of the chemo, but seem to have stablized. We are optimistic. I spoke with a colleague whose 79 year old mother had the same diagnosis and she barely made it through the chemo before she developed pneumonia and died. It is so variable. I will try to update this as we do expect more developments, but hope she can fight off recurrence.
  • katiegro
    katiegro Member Posts: 3

    my husband was diagnosed
    my husband was diagnosed 6/08, age 52. He had 4 cycles of HD Mtx with procarbazine every other treatment. Problems with lungs stopped with 80% of the tumors gone! While on cytarabene,another tumor grew. Whole brain radiation was next, then rituxan to keep it at bay. 8 months, another tumor! Methotrexate with different chemos worked and now, thanks to an autologous stem cell transplant, he is clean, for 16 months!

    He has lost some ability to concentrate, his short term memory is greatly reduced and he has retired on disability but he is still the man I love. Speech therapy has helped rewire his brain, a social worker helps us to navigate the frustrations which come to both of us.

    Sloan kettering is the best! Dr. Abrey was his doc but she has moved. Dr. Kaley and Dr. O'Muro are wonderful. Dr. Sauter is the hemotologist who has cared for him throughout the transplant and I could not ask for a better dr.

    Good luck. This disease is tough but it can be beaten. I will be happy to answer any questions you have along the way! God bless you and your family and friends!

    My mom being treated at Sloan
    My mom, 67 diagnosed with PCNS on June 24. She is up to her 4th chemo treatment. She too is being treated by Dr. Omura and Dr Sauter is handling the transplant, if she gets that far. Next week she is "harvesting" and we are nervous. What are the next steps? What was the transplant like? Any info from the patient's side would be helpful.
  • leprechaun2
    leprechaun2 Member Posts: 79
    katiegro said:

    My mom being treated at Sloan
    My mom, 67 diagnosed with PCNS on June 24. She is up to her 4th chemo treatment. She too is being treated by Dr. Omura and Dr Sauter is handling the transplant, if she gets that far. Next week she is "harvesting" and we are nervous. What are the next steps? What was the transplant like? Any info from the patient's side would be helpful.

    stem cell transplant with Dr Sauter
    G had his transplant july 7, last year. His original diagnosis was 6/08. It came back multiple times and last spring, Dr. OMuro told us that if we didn't do the transplant at that time, he might not be able to do it.

    Because of all the prior treatments he had, he had a difficult time harvesting but the nurses in the bloodbank were wonderful and he was comfortable throughout.

    We went to a program about the process at Sloan and they answered all our questions. Dr. Sauter is the best! G was in the unit for 24 days and the recovery took longer than expected due to his prior treatments but I would do it again in a heartbeat!

    I will be happy to answer any and all of your questions...I will check back here regularly. And if you know how I can privately reach you, I will give you my cell and email. Good luck and may God bless you and your mom!
  • katiegro
    katiegro Member Posts: 3

    stem cell transplant with Dr Sauter
    G had his transplant july 7, last year. His original diagnosis was 6/08. It came back multiple times and last spring, Dr. OMuro told us that if we didn't do the transplant at that time, he might not be able to do it.

    Because of all the prior treatments he had, he had a difficult time harvesting but the nurses in the bloodbank were wonderful and he was comfortable throughout.

    We went to a program about the process at Sloan and they answered all our questions. Dr. Sauter is the best! G was in the unit for 24 days and the recovery took longer than expected due to his prior treatments but I would do it again in a heartbeat!

    I will be happy to answer any and all of your questions...I will check back here regularly. And if you know how I can privately reach you, I will give you my cell and email. Good luck and may God bless you and your mom!

    contact info for leprechaun2
    my email is [email protected]
  • gdpawel
    gdpawel Member Posts: 523
    packvic00 said:

    Primary CNS Lymphoma
    It is good to see some updated discussion on PCNS lymphoma.
    Although the case is VASTLY different from yours, ziegs22, my 73 year-old mother was diagnosed with it in 2/11 after fighting vertigo, vomiting and unsteadiness for almost 10 months. Many specialists were seen and it took several falls and an ER visit to finally find the tumor. Everything I have read online is very negative in terms of prognosis, part of the reason I am sharing at this stage.
    Her primary lesion is in the cerebellum. She is in good health otherwise. After undergoing 5 rounds of methotrexate in-patient, she also had radiation just aimed at the cerebellum in an effort to reduce neuro-cognitive decline associated with WBRT in the elderly.
    Again, these stats don't respond to your question due to age difference, but maybe helpful to others who look online seeking some answers. Her oncologist told us the following for long term prognosis:
    "Prognosis is variable, but for someone her age and in otherwise good medical condition, would expect about 80% alive in 2 years, 50% alive in 4 years, 30% alive in 6 years. And remember people in the 70s and 80s can die from other things too. Regarding remissions, I would estimate about 60-70% chance of achieving remission and about half of those patient maintain remission long term (3-5 years or more). These figures are all specific to PCNSL. If relapse occurs, there are treatment options but I would reserve that discussion for the setting of a recurrence."
    She is doing quite well, has resumed driving and has been officially told she is in remission. Her kidneys did suffer a bit as a result of the chemo, but seem to have stablized. We are optimistic. I spoke with a colleague whose 79 year old mother had the same diagnosis and she barely made it through the chemo before she developed pneumonia and died. It is so variable. I will try to update this as we do expect more developments, but hope she can fight off recurrence.

    CNS disease
    What I found out from the knowledgeable physicians at Penn State Hershey Medical Center was that the worse form of this disease is from lung and breast cancer (a high morbidity rate). The best prognosis of it is from lymphoma cancer. As far as from being from ovarian cancer, because at one time it was rare, no one really knew whether the results in treating it would be similar to lung/breast cancer or lymphoma cancer. My wife had it from ovarian cancer and a relative had it from lung cancer. The best data I ever could get was that the lymphoma type had at least a 75% chance of remission.
  • shmuel
    shmuel Member Posts: 1
    cns prognosis
    The information i have read is that the younger you are the better the prognosis. I am twice your age and have just been diagnosed with month with the same, approx mass 1/4 the size of the brain.

    here is some information:
    Long-term survival in primary CNS lymphoma

    LE Abrey, LM DeAngelis and J Yahalom
    Department of Neurology, Memorial Sloan-Kettering Cancer Center, New York, NY 10021, USA.

    PURPOSE: We have previously reported on 31 patients with primary CNS lymphoma (PCNSL) treated between 1986 and 1992 with methotrexate (MTX), cranial radiotherapy (RT), and high-dose cytarabine who remained free of disease longer than historical controls. PATIENTS AND METHODS: We performed a follow-up analysis of our original cohort and now report their long-term survival and late treatment-related toxicity. RESULTS: The median cause-specific survival was 42 months, with a five-year survival of 22.3% compared with 3% to 4% in historical controls treated with RT alone. Age less than 50 years at diagnosis was a significant prognostic factor for survival (P = .01). Median disease-free survival was 40.3 months; 15 patients relapsed, all but one in the CNS. Late treatment-related toxicity was observed in nearly one third of patients and those more than 60 years of age were at substantially higher risk (P < .0001). CONCLUSION: Combined modality therapy for PCNSL has improved survival, but relapse is common and late neurologic toxicity is a significant complication. Although this approach is highly effective for younger patients, efficacious but less neurotoxic regimens need to be developed for older patients. From the follow ing link there is a 12-36 month after treatment; but some have survived much longer. you may want to google Primary CNS Lymphoma survivors for other links and sites that tell us what the doctors refrain to say. However, in presenting this information of my oncologist they confirm the prognosis. I don't think they want to cloud the issue of treatments with a short term prognosis. I wish you the best success in your life. My thoughts that are days are numbered like a star, and the antidote for our days are within us. Scientifically the days appear to be shortened due to this cancer; however, the final chapter of each of us is yet to be written.

    I found this overview of interest. http://www.medscape.com/viewarticle/550516_6
    It seems to support the usual cases of CNS. I plan on beating the odds as I am asserting my Life Force to rise in me to be the antidote. I believe that I am of Light, and that the Light of Yæhh is the Source of Life in me and in all things.
    Shmuel
  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    How are you doing?
    Hi ziegs22

    I was very interested in your post from last year, as my current situation is very similar to what you wrote. I am a healthy 44 year old male recently diagnosed with primary CNS lymphoma. I have had 4 high dose methotrexate doses with alternating procarbazine & 1 dose of vincristine, currently getting ritixumab and cytarabine in preparation for a autologous stem cell transplant. My diagnosis started with a seizure, then removal of a tumour from my front temporal lobe. Like you, I seemed to respond well to methotrexate and haven't had the cancer spread anywhere else, and am feeling fairly normal. At the very start of my treatment, my oncologist had an initial prognosis of 40% long term cure rate, but I've seen more recent articles that indicate about 70% cure with HD-MXT followed by busulfan, thiopeta and the stem cell recovery. Also, I observed from past studies that if you are healthy after 1 year post treatment, and especially 3 years after treatment, you are likely fully cured. One thing I've seen is that it's best if you can avoid whole brain radiation as there are significant long term neuro effects.
    Curious to know how your treatment went and hopefully you are doing well. Thanks!
  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24

    How are you doing?
    Hi ziegs22

    I was very interested in your post from last year, as my current situation is very similar to what you wrote. I am a healthy 44 year old male recently diagnosed with primary CNS lymphoma. I have had 4 high dose methotrexate doses with alternating procarbazine & 1 dose of vincristine, currently getting ritixumab and cytarabine in preparation for a autologous stem cell transplant. My diagnosis started with a seizure, then removal of a tumour from my front temporal lobe. Like you, I seemed to respond well to methotrexate and haven't had the cancer spread anywhere else, and am feeling fairly normal. At the very start of my treatment, my oncologist had an initial prognosis of 40% long term cure rate, but I've seen more recent articles that indicate about 70% cure with HD-MXT followed by busulfan, thiopeta and the stem cell recovery. Also, I observed from past studies that if you are healthy after 1 year post treatment, and especially 3 years after treatment, you are likely fully cured. One thing I've seen is that it's best if you can avoid whole brain radiation as there are significant long term neuro effects.
    Curious to know how your treatment went and hopefully you are doing well. Thanks!

    Updated Information/my treatment
    I wanted to share some of the information I have found on PCNS Lymphoma, as well as give my perspective on my treatment

    Prognosis

    As someone commented in a post above, there is a lot of different PCNSL prognosis information on the internet. However, I notice that there has been significant progress in the treatment of PCNSL in the last 10 years, so I found I could get much more positive prognosis information if I limited my search to articles written in the past 2 years or so. It looks like the most promising treatment that clinics are working with is to use an “induction” phase of HD-MTX, then proceed into an autologous stem cell transplant protocol. I am not a doctor, but this makes some layman’s sense to me, as HD-MTX (or radiation) attacks any cancer that is residing in the CNS, but the stem cell transplant restarts the bone marrow, so that there is less chance of producing any more malignant “B” cells (ultimately the source of the lymphoma). Speaking of radiation, trials have shown there is limited benefit to WBRT in increasing cure rates above the chemo protocol with ACST, but with significant risk of neuro problems later on, so it would seem WBRT is falling out of the preferred treatment protocol

    I was treated in Calgary, Alberta, Canada where they have been active proponents of the ACST protocol. The Alberta Health services has published their PCNSL protocol with other information on the internet, here is the link:

    http://www.albertahealthservices.ca/hp/if-hp-cancer-guide-lyhe002-lymphoma.pdf (see pages 18 and 19 for info on PCNSL)

    Other sites with more promising prognosis information

    http://www.ncbi.nlm.nih.gov/pubmed/21749848

    http://annonc.oxfordjournals.org/content/early/2012/04/03/annonc.mds059.abstract

    http://www.ncbi.nlm.nih.gov/pubmed/22023529

    Overall 5 year survival rates have increased from <20% in late 1990’s to 60-80% now. Factors such as age and health performance are obviously factors in the survival rate. The ACST is very hard on the body (I can tell from experience), so it may be difficult to tolerate in older or less healthy patients, but I think there are some protocols that are a little less severe.

    My Treatment

    I think on any cancer site/brochure it will tell you that everyone responds differently to chemotherapy, but for reference, I can share how my treatment went, since I had some questions on how it would go at the beginning myself.

    My first HD-MTX treatment went by with limited side effects, so I was wondering, am I going to be lucky and have it easy the whole way or is it going to get harder? Well, my own personal experience was that each subsequent HD-MTX (with or without procarbazine or vincristine) was more difficult, with more nausea and other side effects.

    I was warned ahead of time that the busulfan/thiotepa treatment after collecting my stem cells was going to be rough, and this definitely proved to be the case. A large percentage of patients (about 85%) develop mucositis with these drugs, and I fit in with the majority. The throat pain I developed with the mucositis was the worst pain I have ever had in my life, and none of the usual sore throat remedies (eg, ice, popsicles, gargling) were effective at reducing the pain. I couldn’t eat or drink for several days and overall have lost about 25 lbs since I started the treatment.
    I have since been released from the hospital and am eating and drinking again, but have no appetite or taste buds, so eating seems like a real chore. That said, about 1 week out of the hospital, I am getting slowly better and recovering some of my energy. What also keeps me going is knowing that I am in remission, and that eventually this will pass and I can get on with a normal life.

    If you google “primary cns lymphoma” survivors, you can also find stories of other survivors who have been through WBRT and/or HD-MXT, but I didn’t find many references to survivors who have been through ACST.

    I plan to periodically check this site and provide updates on my own situation, so if anyone would like to ask a question about my treatment , please post a comment and I will eventually respond
  • leprechaun2
    leprechaun2 Member Posts: 79

    Updated Information/my treatment
    I wanted to share some of the information I have found on PCNS Lymphoma, as well as give my perspective on my treatment

    Prognosis

    As someone commented in a post above, there is a lot of different PCNSL prognosis information on the internet. However, I notice that there has been significant progress in the treatment of PCNSL in the last 10 years, so I found I could get much more positive prognosis information if I limited my search to articles written in the past 2 years or so. It looks like the most promising treatment that clinics are working with is to use an “induction” phase of HD-MTX, then proceed into an autologous stem cell transplant protocol. I am not a doctor, but this makes some layman’s sense to me, as HD-MTX (or radiation) attacks any cancer that is residing in the CNS, but the stem cell transplant restarts the bone marrow, so that there is less chance of producing any more malignant “B” cells (ultimately the source of the lymphoma). Speaking of radiation, trials have shown there is limited benefit to WBRT in increasing cure rates above the chemo protocol with ACST, but with significant risk of neuro problems later on, so it would seem WBRT is falling out of the preferred treatment protocol

    I was treated in Calgary, Alberta, Canada where they have been active proponents of the ACST protocol. The Alberta Health services has published their PCNSL protocol with other information on the internet, here is the link:

    http://www.albertahealthservices.ca/hp/if-hp-cancer-guide-lyhe002-lymphoma.pdf (see pages 18 and 19 for info on PCNSL)

    Other sites with more promising prognosis information

    http://www.ncbi.nlm.nih.gov/pubmed/21749848

    http://annonc.oxfordjournals.org/content/early/2012/04/03/annonc.mds059.abstract

    http://www.ncbi.nlm.nih.gov/pubmed/22023529

    Overall 5 year survival rates have increased from <20% in late 1990’s to 60-80% now. Factors such as age and health performance are obviously factors in the survival rate. The ACST is very hard on the body (I can tell from experience), so it may be difficult to tolerate in older or less healthy patients, but I think there are some protocols that are a little less severe.

    My Treatment

    I think on any cancer site/brochure it will tell you that everyone responds differently to chemotherapy, but for reference, I can share how my treatment went, since I had some questions on how it would go at the beginning myself.

    My first HD-MTX treatment went by with limited side effects, so I was wondering, am I going to be lucky and have it easy the whole way or is it going to get harder? Well, my own personal experience was that each subsequent HD-MTX (with or without procarbazine or vincristine) was more difficult, with more nausea and other side effects.

    I was warned ahead of time that the busulfan/thiotepa treatment after collecting my stem cells was going to be rough, and this definitely proved to be the case. A large percentage of patients (about 85%) develop mucositis with these drugs, and I fit in with the majority. The throat pain I developed with the mucositis was the worst pain I have ever had in my life, and none of the usual sore throat remedies (eg, ice, popsicles, gargling) were effective at reducing the pain. I couldn’t eat or drink for several days and overall have lost about 25 lbs since I started the treatment.
    I have since been released from the hospital and am eating and drinking again, but have no appetite or taste buds, so eating seems like a real chore. That said, about 1 week out of the hospital, I am getting slowly better and recovering some of my energy. What also keeps me going is knowing that I am in remission, and that eventually this will pass and I can get on with a normal life.

    If you google “primary cns lymphoma” survivors, you can also find stories of other survivors who have been through WBRT and/or HD-MXT, but I didn’t find many references to survivors who have been through ACST.

    I plan to periodically check this site and provide updates on my own situation, so if anyone would like to ask a question about my treatment , please post a comment and I will eventually respond</p>

    CNSL and ASCT
    Hi.
    you are correct, the Hi-Dose chemo was tough. Hub had lost his tastebuds from the WBRT (he grew a new tumor while on the cytarabene) and he lost them again with the Stem Cell Transplant. I was able to slow some of his weight loss with shakes made from coffee HagenDaz ice cream, wheat germ, carnation instant breakfast and a banana. Thank God, the coffee-chocolate flavors came through somewhat. After about 6 months, flavors have returned. I should also let you know that his favorite beer, a dark German, was the first thing he could taste well!

    He is coming up on 2 yrs this July 7. His scans have been clean! I would recommend this treatment to anyone.

    That said, the effects of the WBRT are all present, difficulty with bathroom, memory, concentration and walking. These are daily challenges for the both of us. I wish we could have avoided the high doses of radiation he needed. He had 25 days of 40 Gly (?) in March 09, followed by Rituxan treatments monthly. It took 8 months for the lymphoma to return. Only to high dose chemo followed by the autologous stem cell transplant has kept him cancer-free and in May we went to Italy with our family.

    It was a beautiful trip and a way to build memories with the kids that were not connected to treatment. The many pics help hub remember it.

    I am grateful for the time this treament has given us and I hope it brings you good news as well.

    BTW, hub was diagnosed at 53 and is now 57.

    If I can help with any info or support, please don't hesitate to ask!
  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24

    CNSL and ASCT
    Hi.
    you are correct, the Hi-Dose chemo was tough. Hub had lost his tastebuds from the WBRT (he grew a new tumor while on the cytarabene) and he lost them again with the Stem Cell Transplant. I was able to slow some of his weight loss with shakes made from coffee HagenDaz ice cream, wheat germ, carnation instant breakfast and a banana. Thank God, the coffee-chocolate flavors came through somewhat. After about 6 months, flavors have returned. I should also let you know that his favorite beer, a dark German, was the first thing he could taste well!

    He is coming up on 2 yrs this July 7. His scans have been clean! I would recommend this treatment to anyone.

    That said, the effects of the WBRT are all present, difficulty with bathroom, memory, concentration and walking. These are daily challenges for the both of us. I wish we could have avoided the high doses of radiation he needed. He had 25 days of 40 Gly (?) in March 09, followed by Rituxan treatments monthly. It took 8 months for the lymphoma to return. Only to high dose chemo followed by the autologous stem cell transplant has kept him cancer-free and in May we went to Italy with our family.

    It was a beautiful trip and a way to build memories with the kids that were not connected to treatment. The many pics help hub remember it.

    I am grateful for the time this treament has given us and I hope it brings you good news as well.

    BTW, hub was diagnosed at 53 and is now 57.

    If I can help with any info or support, please don't hesitate to ask!

    A couple of questions
    Thanks for posting a reply, it's good to hear about a survivor who has gone through a similar treatment, and I am glad to hear that he is continuing to stay in remission.

    You're right, chocolate already comes through for taste, yesterday I tried my first beer since my diagnosis and it tasted good! I was slightly worried I would be an extremely cheap drunk after treatment, but one beer didn't knock me over.

    I realize I am still fairly early after my treatment (1.5 months after stem cell transplant), but I feel a bit impatient when I have days where I don't have much energy or appetite... how long did it take before your husband felt completely "normal" after the stem cell transplant?

    I was also curious about relapse and where tumours can reoccur ... I've heard it would be rare for the cancer to spread outside the CNS, but did the tumour reoccur in about the same location as the original diagnosis? Were there any symptoms that a new tumour had grown, or was it picked up on a scan?

    Thanks again,
    D
  • Smile7
    Smile7 Member Posts: 2
    Question
    Hi Dan. I hope you are doing well. I just started reading your posts. My father in law was diagnosed with Primary CNS Lymphoma in November 2008(age 62). He was officially told that he was clean about June 2009. He has since taken 11 montly consolidation rounds of MTX. And continued with maintenance rounds of MTX every 3 months. We were just told that the maintenance rounds would stop as they have no positive date on it. He was given an option of ASCT or do nothing with MRI done every 3 months. We have gotten advice recommending both of these options and are at a dilemma in choosing one. I was wondering if in doing your research you came up with anything that can shed some light on our situation. You did mention that you had seen studies or posts that mentioned 3 years clean would be considered a "cure". I'd be interested if you can somehow direct me to the source of that. Any information you can give us would be much helpful. Wishing you the best along with all that are reading this posting. Thanks.
  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    Smile7 said:

    Question
    Hi Dan. I hope you are doing well. I just started reading your posts. My father in law was diagnosed with Primary CNS Lymphoma in November 2008(age 62). He was officially told that he was clean about June 2009. He has since taken 11 montly consolidation rounds of MTX. And continued with maintenance rounds of MTX every 3 months. We were just told that the maintenance rounds would stop as they have no positive date on it. He was given an option of ASCT or do nothing with MRI done every 3 months. We have gotten advice recommending both of these options and are at a dilemma in choosing one. I was wondering if in doing your research you came up with anything that can shed some light on our situation. You did mention that you had seen studies or posts that mentioned 3 years clean would be considered a "cure". I'd be interested if you can somehow direct me to the source of that. Any information you can give us would be much helpful. Wishing you the best along with all that are reading this posting. Thanks.

    Paper with Overall Survival info
    Hi,

    For full disclosure, since I am not a doctor, I should preface my comments by saying that the 3 year “cure” was my interpretation of information presented in the paper below, and I have not seen any research which formally declares this statement.

    A link is included below to an abstract presented at a 2010 American Hematology conference. My understanding is that two centers in Alberta treated PCNSL differently for about 10 years; the one in Calgary started using TBC (thiotepa, busulfan and cyclophosphamide)+ACST, while the other continued with the traditional treatment of MXT (with or without radiation). This provided a good opportunity to directly compare the two treatments. A chart at the bottom of the abstract shows a chart with overall survival over time comparing the two treatments.

    https://ash.confex.com/ash/2010/webprogram/Paper33500.html

    My interpretation was that for patients treated with TBC/ASCT was that survival flattens out at about 36 months, so if a patient makes it past this point after TBC/ASCT it would seem to me this is likely a complete cure. Now that I look at this chart again, I realize that this is not true for non-TBC/ASCT, with the chart does not flatten until about 84 months

    I completely understand your dilemma; since your father in law has been in remission for about 3 years, it would seem that his prognosis could be reasonable, and as you have probably been told, there is some risk of treatment mortality associated with TBC/ASCT. The only other fact I know is that TBC/ASCT can be used for “salvage” therapy for patients who have relapsed with just MXT or radiation treatment (example being Leprechaun2 per posts above), so a decision against ACST now does not necessarily have to be final. I assume if a relapse is detected early (i.e. MRI) this can improve the treatment odds. Thanks for your best wishes and I return the same to your family as well, good luck with your difficult decision.
  • leprechaun2
    leprechaun2 Member Posts: 79

    A couple of questions
    Thanks for posting a reply, it's good to hear about a survivor who has gone through a similar treatment, and I am glad to hear that he is continuing to stay in remission.

    You're right, chocolate already comes through for taste, yesterday I tried my first beer since my diagnosis and it tasted good! I was slightly worried I would be an extremely cheap drunk after treatment, but one beer didn't knock me over.

    I realize I am still fairly early after my treatment (1.5 months after stem cell transplant), but I feel a bit impatient when I have days where I don't have much energy or appetite... how long did it take before your husband felt completely "normal" after the stem cell transplant?

    I was also curious about relapse and where tumours can reoccur ... I've heard it would be rare for the cancer to spread outside the CNS, but did the tumour reoccur in about the same location as the original diagnosis? Were there any symptoms that a new tumour had grown, or was it picked up on a scan?

    Thanks again,
    D

    We've been busy!
    Hi Dan,
    It took about 6 months for Hub to feel like his old self. But in that time he was never sick - just tired or weak. Also, the heat hit him like it never did before, he would get light-headed and need to sit when it was above 85. We ended up getting a walker with a seat to make things easier.

    He has been getting his vaccinations now for over a year and we are coming down the home stretch. He has been having some symptoms since last fall, like confusion and difficulty walking, as well as some incontinence which the docs had warned us would happen from the whole brain radiation he had. Things were getting bad and finally, on July 5, they gave him a shunt from his brain to abdomen, all internal, and all his symtoms have improved!

    He is his old charming self. I am so happy he is back! I hope you do not have to deal with this in the future but it is good to know there is a treatment.

    As far as the tumors, his were all in the brain, in diferent parts of it. He had 2 at diagnosis and the 3rd was detected by MRI during treatment. The 4th had some of the confusion of the first set but it was minimal. It was found at his regularly scheduled bi-monthly MRI.


    He has just reached his Second Anniversary, July 7, and is still tumor free!!!!!!! I hope the same for you Dan.

    Keep in touch,
    ann
  • Smile7
    Smile7 Member Posts: 2

    Paper with Overall Survival info
    Hi,

    For full disclosure, since I am not a doctor, I should preface my comments by saying that the 3 year “cure” was my interpretation of information presented in the paper below, and I have not seen any research which formally declares this statement.

    A link is included below to an abstract presented at a 2010 American Hematology conference. My understanding is that two centers in Alberta treated PCNSL differently for about 10 years; the one in Calgary started using TBC (thiotepa, busulfan and cyclophosphamide)+ACST, while the other continued with the traditional treatment of MXT (with or without radiation). This provided a good opportunity to directly compare the two treatments. A chart at the bottom of the abstract shows a chart with overall survival over time comparing the two treatments.

    https://ash.confex.com/ash/2010/webprogram/Paper33500.html

    My interpretation was that for patients treated with TBC/ASCT was that survival flattens out at about 36 months, so if a patient makes it past this point after TBC/ASCT it would seem to me this is likely a complete cure. Now that I look at this chart again, I realize that this is not true for non-TBC/ASCT, with the chart does not flatten until about 84 months

    I completely understand your dilemma; since your father in law has been in remission for about 3 years, it would seem that his prognosis could be reasonable, and as you have probably been told, there is some risk of treatment mortality associated with TBC/ASCT. The only other fact I know is that TBC/ASCT can be used for “salvage” therapy for patients who have relapsed with just MXT or radiation treatment (example being Leprechaun2 per posts above), so a decision against ACST now does not necessarily have to be final. I assume if a relapse is detected early (i.e. MRI) this can improve the treatment odds. Thanks for your best wishes and I return the same to your family as well, good luck with your difficult decision.

    Thank you
    Hi. I wanted to thank you for taking time out to write a thorough response with the link to the study.For someone who is not a doctor your posts are thorough, well thought out and make a lot of sense. We will wait for one more appointment before the decision is made. I hope to keep you posted. Best wishes again. Thank you.
  • oilernick
    oilernick Member Posts: 9

    Paper with Overall Survival info
    Hi,

    For full disclosure, since I am not a doctor, I should preface my comments by saying that the 3 year “cure” was my interpretation of information presented in the paper below, and I have not seen any research which formally declares this statement.

    A link is included below to an abstract presented at a 2010 American Hematology conference. My understanding is that two centers in Alberta treated PCNSL differently for about 10 years; the one in Calgary started using TBC (thiotepa, busulfan and cyclophosphamide)+ACST, while the other continued with the traditional treatment of MXT (with or without radiation). This provided a good opportunity to directly compare the two treatments. A chart at the bottom of the abstract shows a chart with overall survival over time comparing the two treatments.

    https://ash.confex.com/ash/2010/webprogram/Paper33500.html

    My interpretation was that for patients treated with TBC/ASCT was that survival flattens out at about 36 months, so if a patient makes it past this point after TBC/ASCT it would seem to me this is likely a complete cure. Now that I look at this chart again, I realize that this is not true for non-TBC/ASCT, with the chart does not flatten until about 84 months

    I completely understand your dilemma; since your father in law has been in remission for about 3 years, it would seem that his prognosis could be reasonable, and as you have probably been told, there is some risk of treatment mortality associated with TBC/ASCT. The only other fact I know is that TBC/ASCT can be used for “salvage” therapy for patients who have relapsed with just MXT or radiation treatment (example being Leprechaun2 per posts above), so a decision against ACST now does not necessarily have to be final. I assume if a relapse is detected early (i.e. MRI) this can improve the treatment odds. Thanks for your best wishes and I return the same to your family as well, good luck with your difficult decision.

    Dear “Dan in
    Dear “Dan in Canada”:

    Like you, I am a man in my early 40’s who was recently diagnosed with Primary CNS Lymphoma. I will soon be finishing six months of MTX treatments. I have also been taking Rituximab and Temodar. To date, my treatments have gone really well and I feel virtually normal. My scans are “clear” and I appear to be in some sort of remission. I continue to work, exercise and coach my son’s baseball team. I even go camping and hiking with his Boy Scout Troop.

    Aside from the huge inconvenience of it all, I must admit that the treatments to date have been far easier than I could have imagined at the front end. (My business is in shambles at the moment, however, but I digress.)

    Assuming I pass all of the prefatory tests, I am slated to undergo a stem cell transplant in mid-October. My doctors (at the Mayo Clinic in Phoenix) are world class and they appear to have been as aggressive as possible in treating my condition. I feel truly blessed to have so many highly skilled experts overseeing my situation.

    My wife and I – independently – stumbled upon your postings and given the closeness of your situation to mine, I kinda felt obligated to send you a “hi” and “thanks” for keeping us updated on your progress. God willing, I will do the same on my end.

    I couldn’t tell from your posting what your situation is but I am a father of two fairly young kids. To be honest, I’m not all that concerned with the notions of “cure”, “CRR”, “PFS” and the like. I just pray every day, several times a day, that God will allow me to hang around long enough to see my youngest child leave the house in several years. At the moment, that’s my number one priority in life and it appears achievable. Unfortunately, I’m not sure what my number two priority in life actually is (assuming I even have one).

    I look forward to writing to you in the months and years to come.

    Regards,
    OilerNick
  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    oilernick said:

    Dear “Dan in
    Dear “Dan in Canada”:

    Like you, I am a man in my early 40’s who was recently diagnosed with Primary CNS Lymphoma. I will soon be finishing six months of MTX treatments. I have also been taking Rituximab and Temodar. To date, my treatments have gone really well and I feel virtually normal. My scans are “clear” and I appear to be in some sort of remission. I continue to work, exercise and coach my son’s baseball team. I even go camping and hiking with his Boy Scout Troop.

    Aside from the huge inconvenience of it all, I must admit that the treatments to date have been far easier than I could have imagined at the front end. (My business is in shambles at the moment, however, but I digress.)

    Assuming I pass all of the prefatory tests, I am slated to undergo a stem cell transplant in mid-October. My doctors (at the Mayo Clinic in Phoenix) are world class and they appear to have been as aggressive as possible in treating my condition. I feel truly blessed to have so many highly skilled experts overseeing my situation.

    My wife and I – independently – stumbled upon your postings and given the closeness of your situation to mine, I kinda felt obligated to send you a “hi” and “thanks” for keeping us updated on your progress. God willing, I will do the same on my end.

    I couldn’t tell from your posting what your situation is but I am a father of two fairly young kids. To be honest, I’m not all that concerned with the notions of “cure”, “CRR”, “PFS” and the like. I just pray every day, several times a day, that God will allow me to hang around long enough to see my youngest child leave the house in several years. At the moment, that’s my number one priority in life and it appears achievable. Unfortunately, I’m not sure what my number two priority in life actually is (assuming I even have one).

    I look forward to writing to you in the months and years to come.

    Regards,
    OilerNick

    Thanks for saying hi
    Dear OilerNick,

    Thanks very much for sharing your similar situation, I find it really helpful and consoling to compare notes and know that we are not alone in what we are going through.

    I have two daughters aged 9 and 12, and like you, my greatest wish is to be around with my wife to see them graduate from school, and later on maybe walk them down the aisle and hold a grandchild in my arms.

    I also feel blessed and lucky that there have been some developments in CNS lymphoma treatment in the past few years that have improved the chances of survival. The doctors and staff at my hospital have been excellent and I feel I’ve gotten world class care. Because my illness came on very suddenly and unpredictably (seizure), it felt like I could have easily passed away that day, so I feel very fortunate that I’m still around, having a second chance at life and I look at every new day as a blessing.

    I’m about 3 months now out from my hi-dose chemo and stem cell transplant and now feel pretty normal. Taste buds and appetite came back around 4 – 6 weeks after and about that time I started regain more energy. My facial hair is just starting to come back now, for a while there I only needed to shave a bit of fuzz every 2 weeks or so. Not having to shave every day was actually pretty nice. I’m also starting to regrow some hair back on my head … though the parts that were missing hair before aren’t miraculously growing in again (darn!). I have been out hiking and doing jobs around the house this summer and feel pretty normal. The only remaining effects I still have from the chemo are my digestion isn’t completely back to normal, and I have periods of low blood pressure meaning I can feel light headed if I get up too quickly. These symptoms aren’t really a problem and I will be going back to work in the next few weeks.

    Hope the rest of your treatment including the stem cell transplant goes as well, and again I appreciate hearing about your progress

    Regards,
    Dan
  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24

    Updated Information/my treatment
    I wanted to share some of the information I have found on PCNS Lymphoma, as well as give my perspective on my treatment

    Prognosis

    As someone commented in a post above, there is a lot of different PCNSL prognosis information on the internet. However, I notice that there has been significant progress in the treatment of PCNSL in the last 10 years, so I found I could get much more positive prognosis information if I limited my search to articles written in the past 2 years or so. It looks like the most promising treatment that clinics are working with is to use an “induction” phase of HD-MTX, then proceed into an autologous stem cell transplant protocol. I am not a doctor, but this makes some layman’s sense to me, as HD-MTX (or radiation) attacks any cancer that is residing in the CNS, but the stem cell transplant restarts the bone marrow, so that there is less chance of producing any more malignant “B” cells (ultimately the source of the lymphoma). Speaking of radiation, trials have shown there is limited benefit to WBRT in increasing cure rates above the chemo protocol with ACST, but with significant risk of neuro problems later on, so it would seem WBRT is falling out of the preferred treatment protocol

    I was treated in Calgary, Alberta, Canada where they have been active proponents of the ACST protocol. The Alberta Health services has published their PCNSL protocol with other information on the internet, here is the link:

    http://www.albertahealthservices.ca/hp/if-hp-cancer-guide-lyhe002-lymphoma.pdf (see pages 18 and 19 for info on PCNSL)

    Other sites with more promising prognosis information

    http://www.ncbi.nlm.nih.gov/pubmed/21749848

    http://annonc.oxfordjournals.org/content/early/2012/04/03/annonc.mds059.abstract

    http://www.ncbi.nlm.nih.gov/pubmed/22023529

    Overall 5 year survival rates have increased from <20% in late 1990’s to 60-80% now. Factors such as age and health performance are obviously factors in the survival rate. The ACST is very hard on the body (I can tell from experience), so it may be difficult to tolerate in older or less healthy patients, but I think there are some protocols that are a little less severe.

    My Treatment

    I think on any cancer site/brochure it will tell you that everyone responds differently to chemotherapy, but for reference, I can share how my treatment went, since I had some questions on how it would go at the beginning myself.

    My first HD-MTX treatment went by with limited side effects, so I was wondering, am I going to be lucky and have it easy the whole way or is it going to get harder? Well, my own personal experience was that each subsequent HD-MTX (with or without procarbazine or vincristine) was more difficult, with more nausea and other side effects.

    I was warned ahead of time that the busulfan/thiotepa treatment after collecting my stem cells was going to be rough, and this definitely proved to be the case. A large percentage of patients (about 85%) develop mucositis with these drugs, and I fit in with the majority. The throat pain I developed with the mucositis was the worst pain I have ever had in my life, and none of the usual sore throat remedies (eg, ice, popsicles, gargling) were effective at reducing the pain. I couldn’t eat or drink for several days and overall have lost about 25 lbs since I started the treatment.
    I have since been released from the hospital and am eating and drinking again, but have no appetite or taste buds, so eating seems like a real chore. That said, about 1 week out of the hospital, I am getting slowly better and recovering some of my energy. What also keeps me going is knowing that I am in remission, and that eventually this will pass and I can get on with a normal life.

    If you google “primary cns lymphoma” survivors, you can also find stories of other survivors who have been through WBRT and/or HD-MXT, but I didn’t find many references to survivors who have been through ACST.

    I plan to periodically check this site and provide updates on my own situation, so if anyone would like to ask a question about my treatment , please post a comment and I will eventually respond</p>

    Some other symptoms after transplant
    I'm now almost four months out from the hi-dose chemo and stem cell transplant. I feel almost 100%, but have had a couple of unexpected side effects pop up. Most noticeably a week or so ago I started getting a tingling sensation in my legs. I eventually correlated this to times when I've done some type of physical activity and then bend my neck forward to look down. When I bend my neck forward, I get what feels like an electric shock mostly in my legs, but sometimes down my neck & back. Turns out this is called L'Hermitte's sign and does happen post some types of hi-dose chemo, though I wasn't aware that this could be a side effect of any of the drugs I took (busulphan, thiotepa, ritixumab, cyterabine, methotrexate, vincristine, procarbazine). I was originally freaking out because L'hermitte's can also be a sign of MS, which both my mother and an aunt developed in later life. However, I've read and been told that this should clear up in a couple of months, so here's hoping.
    Secondly, my blood counts originally skyrocketed after chemo was finished, but have been drifting down ever since, and are now below "normal" range. Again, I've been told this is normal after chemo, and counts should gradually recover in the next couple of months.

    Wondering if anybody else has experienced L'Hermitte's or has any comments about blood count recovery?
  • oilernick
    oilernick Member Posts: 9

    Thanks for saying hi
    Dear OilerNick,

    Thanks very much for sharing your similar situation, I find it really helpful and consoling to compare notes and know that we are not alone in what we are going through.

    I have two daughters aged 9 and 12, and like you, my greatest wish is to be around with my wife to see them graduate from school, and later on maybe walk them down the aisle and hold a grandchild in my arms.

    I also feel blessed and lucky that there have been some developments in CNS lymphoma treatment in the past few years that have improved the chances of survival. The doctors and staff at my hospital have been excellent and I feel I’ve gotten world class care. Because my illness came on very suddenly and unpredictably (seizure), it felt like I could have easily passed away that day, so I feel very fortunate that I’m still around, having a second chance at life and I look at every new day as a blessing.

    I’m about 3 months now out from my hi-dose chemo and stem cell transplant and now feel pretty normal. Taste buds and appetite came back around 4 – 6 weeks after and about that time I started regain more energy. My facial hair is just starting to come back now, for a while there I only needed to shave a bit of fuzz every 2 weeks or so. Not having to shave every day was actually pretty nice. I’m also starting to regrow some hair back on my head … though the parts that were missing hair before aren’t miraculously growing in again (darn!). I have been out hiking and doing jobs around the house this summer and feel pretty normal. The only remaining effects I still have from the chemo are my digestion isn’t completely back to normal, and I have periods of low blood pressure meaning I can feel light headed if I get up too quickly. These symptoms aren’t really a problem and I will be going back to work in the next few weeks.

    Hope the rest of your treatment including the stem cell transplant goes as well, and again I appreciate hearing about your progress

    Regards,
    Dan

    Dear Dan:
    Thanks for writing

    Dear Dan:

    Thanks for writing back to me. It is indeed interesting to see how someone in (y)our situation is responding post-ASCT.

    At the present time, I am scheduled to begin my ASCT on October 8. Oddly enough, I am anxious to get it started. A couple of weeks ago I suffered a bit of a set back when a blood clot formed in my neck. I didn't know what was going on and my head felt like it was going to explode from the pressure. Suffice it to say, I was quite worried. Fortuantely, it appears to have been caused by my port and a few injections of blood thinner have made the problem largely disappear. At the moment, I feel absolutely normal (although I do feel out of shape and/or stressed).

    As for your posting, I can't tell you how much I too want to be around to walk my (14-year old) daughter down the aisle one day and/or to hold my grandchild(ren). To be able to coach a grandchild's Little League game and/or take them to Cub Scout camp someday would be more than I could ever even pray for. While this experience has been a real bummer overall, I must admit that it hasn't been a wholly negative experience. I really feel bad for all of the Dads out there who, unlike us, never get a chance to tell their kids just how much they love them.

    Best wishes on your continued recovery and I'll touch base with you again during my extended vacation at the Mayo Clinic.

    Regards,
    OilerNick

    p.s. We still haven't explained to our kids the details about Dad's upcoming ASCT. From their perspective, I appear just fine although they do know that I have cancer. If you have any hints about how to share this information with them, I would greatly appreciate it.